Thursday, November 18, 2010

Benlysta close to final voting day...

On December 9th they will put it to a final vote, but it looks promising that Benlysta will be the first drug specifically made for Lupus patients & our varied needs in over fifty years! That seems hard to believe, but then again not really. Sometimes it feels like I have a disease that is taboo or something because everyone is so supportive of every type of cancer there is, whereas most people don't even know what Lupus is. Doesn't that frustrate the hell out of you? It does me. It's like we've got this consuming disease & then have to try to explain to others what we are going through & I still often end up feeling judged & as if they feel my disease isn't worthy of being a cause.

I am on chemotherapy injections once weekly and have been since May. That's a lot of chemo & I still feel overlooked & like I have to prove something, but don't have the energy to most often. I just want to be able to take a shower without feeling like I've ran a marathon.

Maybe Benlysta will be for me, maybe it won't though. I have to realize that the regimen I am on now may be the one I'm supposed to stay on. But at least there will finally be a drug specifically for Lupus. At least it can help other people, even if not me. I have such high hopes for this medication. I hope it lives up to them!